As storefronts, neighborhoods, and city sidewalks transform into holiday wonderlands, hospice patients and caregivers often feel a range of emotions: disconnect, guilt, depression, loneliness, anger, and fear. Some families want to bypass the holidays completely, while others may want the celebrations to continue as normally as possible.
A loved one with a terminal illness, and families facing imminent loss, may want to check off every bucket-list item, while others don’t have the strength or ability to carry out even simple traditions, like tree decorating. It’s important for families to go into the holidays with realistic goals and desires, while maintaining flexibility. Avoid feeling like you need to live up to others’ expectations, and do only what is comfortable for you.
Members of your hospice team can help both patient and family outline personalized goals of a memorable holiday season and provide care, support, guidance, presence, and respite opportunities. The most important resource is asking for assistance from loved ones and relying on experts to help you shoulder the burden.
Cheryl Spaans, Director of Training and Development at Heart to Heart Hospice, offers the following tips for hospice caregiving and coping with grief over the holidays.
Set Realistic Goals
- Let go of “the list” of everything you’ve done in the past or feel you must do.
- Decide on one thing you cannot do without this holiday season, and make sure it happens, such as driving to see holiday lights with music or watching a favorite movie that’s an annual tradition.
- Scale down on decorations, traditions, visitors, and demands on your schedule (plays, pageants, tree lightings, etc.).
- Remember that your loved one on hospice tires easily and may be bed bound or nonverbal. Don’t force them to join the celebration. Let family members come share a few special moments with your loved one, even if they’re resting. When possible, space out family visits over several days and don’t have constant noise or traffic.
- Don’t exchange gifts or simplify gift giving with online shopping or gift cards. Your resources may already be stretched and time together is a gift in itself.
- Create a new tradition that can be simple, yet meaningful.
Accept Practical Support
- Set goals with your hospice nurses for the holidays – discuss pain management, the logistics of celebrations or travel, and advice on what has worked for other families.
- If you are hosting one last holiday gathering for your loved one, delegate and simplify! Order a catered meal or have family members bring a potluck. Make clean-up easy with paper plates.
- Hospice team members can provide support when caregivers need to leave the house or take some time for self-care. Accept help from them or other family members.
- Hospice on-call support is available 24/7, so don’t be afraid to reach out if health status changes or if you have questions.
- Respite care is short-term coverage, with up to five days of inpatient continuous care in a Medicare-approved inpatient facility, nursing facility, or hospital. This needs to be approved and pre-arranged by your hospice provider. The caregiver may need respite to travel, recover from exhaustion or illness themselves, or take care of other responsibilities.
Protect Your Physical & Emotional Well Being
- Plan for extra rest. Eat healthy food. Exercise regularly. Enough of these three things will help you have energy and wellbeing.
- Seek and accept emotional support from loved ones, a chaplain, a counselor, or support group. Have someone safe you can talk to about your emotions.
- Plan breaks or simple diversions in your daily routine.
- If you can’t physically get away, find ways for self-care like a long bath, tea and a good book, or practicing deep breathing techniques.
- Periods of alone time may be helpful, but too much isolation can be harmful. Find a balance.
As a caregiver of a hospice patient, grief comes in unpredictable waves. A song or an ornament may spark a fond memory and trigger grief. It’s healthy to honor your grief instead of stuffing it down. Realize that a range of emotions is normal as you straddle sadness and holiday merriment.
If you have a terminally ill loved one who is declining, consider calling hospice services for practical support and care. For those living in Indiana, Michigan, or Texas, call on Heart to Heart Hospice, offering comfort, support, and dignity for hospice families.